Abstract

Friday, March 30, 2018

After you’ve handed over the car keys

Living in
Somerville, Massachusetts, one of the densest cities in the United States, I’ve
been spared somewhat from the difficulties of my Alzheimer’s cohorts are
experiencing. I gave up my driving license in the fall of 2016, but I can still
get around on my bike, or on foot, to any of three supermarkets, each of which is
within a 20-minute walk from my house. Of course, the weight of my cargo has to
be very limited. Even if I had a milk crate on the back of my bike, the amount
of my groceries would be limited. Instead, Paula and I share the grocery
shopping at the Somerville Market Basket, where prices are a good deal lower
than the other supermarkets.

Last week, I interviewed my cohorts Mike Belleville and
Jane Callahan. The three of us were each diagnosed roughly at the same time, in
2015. Mike’s diagnosis was changed to Lewy bodies disorder, another form of
dementia. And Jane went through a similar process, in which her diagnosis was
changed to posterior cortical atrophy, a form of dementia that affects visual
processing.

I will revisit this topic later, but first I wanted to
hear from Mike about his experiences with both Uber and “The Ride.” The service
is operated by the MBTA at the public’s expense, in accordance with the 1991 Americans
WithDisabilities. As the MBTA states,
“Under the ADA, paratransit functions as a safety net. It is not intended to be
a comprehensive system of transportation, and it’s different from medical or
human services.”

When I asked Mike what he most missed about driving, he
quickly replied, “Having the independence
to go whenever I want to go.” At the time of this interview, Mike’s father was
in the hospital, but Mike had no practical way to visit him. Mike likes to go
fishing with his friends, but these days he has depend on the availability of
his friends to drive him.

Mike uses Uber, but is somewhat wary of the service. “Is
this the right car?’ he said with a chuckle. “If I am in Boston, it can be
confusing. You know, there are so many cars.” Mike added, “The app has changed.”
And when people with dementia have to adapt to a novel situation, it can be challenging.

Mike uses the Ride to get to his senior center in Douglas,
in Worcester County. He appreciates having access to The Ride, but the system
has it limits. As Mike put it, “If I wanted to go to my local senior center,
it’s not like I could call [The Ride] at 8 a.m. in the morning and they would
bring me there. And if I’d say, ‘OK, I’m coming back at four o’clock, they
would say, ‘Oh, no, you have to go back at 2 p.m.’ “You’re tied to whatever the
schedule is.”

Jane’s problems may be more challenging, because of the
nature of posterior cortical atrophy. It’s not a standard feature of
Alzheimer’s. I wasn’t at the State House that day, but the conditions sounded
awful, for Jane, in particular. The State House is an ancient building, and
trying to find your way to the right hearing room on your own can be
challenging. And you don’t have to have dementia to get lost within this
ancient edifice.

But, according to Jane, the signage met her needs. What
she wants is the freedom to be spontaneous. As Jane commented, “There is still
a loss of freedom. Your loss of spontaneity is not valued. You can’t just say,
I want to go to the museum. And you have to be very specific. ‘Am I going be to
standing out in the rain?’ It’s the same way with Uber. Sometimes the drivers
are inexperienced, and they don’t know the area. And sometimes they don’t.” In
what sounds like a GPS glitch, the Uber
driver ended up in the Boston neighborhood of West Roxbury, about as far you
can travel and still be in Boston. That’s one of the drawbacks of GPS. The
technology is not infallible. I learned that in Washington, D.C., a few years
ago. But that’s another story.